Tyneside Kidney Patients a Personal Account

TYNESIDE KIDNEY PATIENTS A PERSONAL ACCOUNT

I’ve been very involved with the life of the Tyneside KPA since 1998. I’ve decided not to stand for election to a committee post this year for two reasons. I’ve been standing back quite a bit while others have got on with running our activities very successfully. I want to pass on my experience while I am still fit and able to do so. Also our editor Keith Vickers has asked me to write a live account in contrast to the tributes to recently deceased members.

I never had any idea that getting upset about Castle Morpeth Borough Council charging £10 +VAT a week for collecting a bag of surgical waste, while I was on peritoneal dialysis at home, would lead to so much. Faced with a charge of over £600 a year for being ill made me very angry. I was fortunate in having a good friend who was also a councillor. He followed this up and it was also picked up by the Journal as a “human interest story.” The councillors cancelled the charge and I learned an important lesson about taking action.

I wrote an article for the TKPA magazine and started to go to committee meetings. The late Katherine Wright was chairman and she asked me to take over the post. I became a committee member for a year, to find out what was involved, and then chairman the following year. I served a full 3 years and have since served a further 4 years as chairman, 3 as secretary and just less than one as vice chairman. I did have to stand aside in 2003 during a difficult time but got involved again in rebuilding the work of the association in 2006.

In 2000 I also joined the Northumberland Community Health Council (CHC) which was a watchdog over NHS services. I learned a lot about the very complex organisation of the NHS. I also carried out a survey on mistakes in repeat prescriptions with the help of many members who completed the survey. This showed a much higher rate of mistakes than anyone suspected and did lead to improvements in the work of GP receptionists who make up repeat prescriptions.

The TKPA was nearly closed down in 2006 but the resignation of the secretary led to rebuilding work being done by Joan Longstaff, the late Margaret Nelson and Isobel Stubbington. I got involved and, helping the retired accountant Len Cline, set about creating a full set of financial records and getting them audited. Sadly, what we found was so bad we had to involve the police. This was a tough time but we got through it successfully with a lot of support from members.

Rebuilding the life of our association involved other positive changes. John Tapson was head of the renal unit and he asked us to joint meetings that are held quarterly. These are valuable in keeping up with changes that are happening on the renal unit. They give us a chance to raise our concerns and compliments. It has also led to us developing a series of informative meetings to complement the work of staff and keep us updated on developments in renal care.

We had a surplus of crackers after a Christmas dinner and Joan Longstaff suggested we took them round patients, we decided to donate a sum of money to add a gift, sweets and a greetings card to almost 300 hospital dialysis and transplant patients.

This has led to us acting as Santa, or “Santey,” Claus each year for renal patients On one visit I was standing in front of one lady when the over large red trousers slipped down and her eyes popped a bit. Another man woke up to see my Santa’s whiskers and asked “Am I dreaming?” He wasn’t. In these visits I’ve met so many different life stories. A patient who has a racing car he’s raced in Malta. A wheelchair patient who had been on a cruise on a specially adapted tall ship. Another young father who proudly showed me a picture of his baby daughter born the day before. What varied lives I keep coming across.

Two particular things stand out among the many that happened. We were able to take action to improve the very poor ambulance service during 2010 and at a Rapid Process Improvement Workshop (RPIW) in February 2011. It led to big improvements and complaints that had been running at 4-5/week virtually disappeared. Sadly, they have since gone downhill a bit but they are nowhere near as bad as they were before the RPIW.

The second thing was developing an idea I came across in Australia in 2009. Getting medical alert wristbands made and sold across the country. Taken on by Mike Hayhoe in particular we have sold about 5,000 and sales are steadily continuing.

I’ve only described some of the things I have been involved in. How have these and many more been possible? I want to thank all the patients and staff who have been so helpful, encouraging and supportive. Sadly, I’ve been to the funerals of quite a few active members, but that’s the nature of our organisation. There is one very special person who has been absolutely essential, my wife and closest friend Rachael.

This account would not be complete however without mentioning that at the very core of my being is a deep personal Christian faith. A faith that goes back 55 years and is marked by sheer amazement at the unconditional love summarised by the word ‘grace.’ Grace meaning a gift given that cannot be earned. I’ve made so many mistakes that one of my favourite hymns puts my feelings in the well-known words:

Amazing grace, how sweet the sound,

That saved a wretch like me.

I once was lost but now I’m found;

Was blind but now I see.

(The 19th century ex-slaver John Newton)

Simon Lloyd